Danielle's Story

Hello my name is Danielle, I’m 21 years old and I live in Greater Manchester. When I was born I was diagnosed with having a craniofacial condition called Craniofrontonasal dysplasia, which caused the bones in my skull to fuse together. This meant that there was little room for my brain to grow and develop. Other features of my condition included having wide spaced eyes, splits in the nails and webbing under the arms.

Over the past 21 years, I have had a number of operations to rectify the shape of my face and skull, the first being when I was 9 months old. Here, the fused sutures in my skull were separated giving my brain room to grow. The operation lasted 11 hours, which I can only imagine for my parents, was an anxious, nerve-wracking wait. Shortly after this, I was referred to the John Radcliffe Hospital in Oxford, one of four specialist units for dealing with Craniofacial conditions like mine. My second major operation was performed in Oxford when I was 4 years old, and this was to bring my forehead forward. This involved breaking the bones in my skull and inserting a metal frame and plates to which my bones could grow and fuse to. My final major operation was when I was 5 years old, and this was done to move my orbital boxes closer together.

After this operation, I was left with quite a prominent Y scar above my nose. On a few occasions children from my class would ask why I had an “upside down Y” on my face and I would tell them that I’d had an operation. From a young age, my parents told me that I had a craniofacial condition, but I never assumed that I was any different because of it. This meant that I was happy to tell the other children about my condition if they asked questions about my appearance. Although, I thankfully do not have many memories about the operations themselves, I do remember that I enjoyed my yearly trips to Oxford, and never felt negatively about having to go to hospital. Although I was told about my operations, I remember never feeling anxious or scared about them. My mum even recalls me happily skipping down to the operating theatre! For me, having an operation meant that I was bought lots of toys and that after recovery we could go on a nice family holiday together in Florida.

As I reached my late teenage years, I became more conscious of my appearance and developed a bigger awareness of my condition. Although I never had any major anxiety about the way I looked, my squint was something that had bothered me from a young age, as it made me feel like I stood out from the rest of my peers. I was also uncomfortable with how I could feel the metal plates and screws from my past operations, and the way it impacted the shape of my forehead. Before I started University, I had an operation to remove the metal frame and plates from my skull and my forehead was made smoother by using fillers. A year later, I had another operation to tighten the muscles around my eyes, to remove my squint. Since these two operations I have a new found confidence, and find it much easier giving eye contact without being afraid that someone will notice my squint or the shape of my forehead.

Despite having many operations, there is little about the way I look today which would make others assume that I was born with my condition.

I have now been under the care of Dr Wall at the Oxford John Radcliffe Hospital for just over 20 years. The Craniofacial Unit Team have been brilliant at providing care and support to myself and my family, whether it be when I have been in hospital for surgery, going for check-ups, or by answering a question over the phone. I feel fortunate to be under the care of such an incredible team, who have made such a difference to my life.

Although I was born with a Craniofacial condition, it has never held me back from doing what I want to do. I have recently graduated from Durham University with a 2.1 honours degree in Education and Psychology and next year will be completing my primary teacher training at Cambridge University, something which myself and my family are extremely proud of.

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